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CARING TOGETHER

SOME OF THE THINGS THAT MOTIVATE US. How we saw ourselves in 2001 !

DEATH IS A NATURAL PHASE OF LIFE. Unless we are precipitated into dying by accident, disease or war, dying and death are programmed into us by our genes just as are childhood, adolescence, maturity and old age. Like all other phases of life, plans might be made to square up to all that is implied. We don’t often do that (at least in the cultures we are most familiar with). Each cultural group might ask itself why not?

CARING TOGETHER actually has the widest possible brief for all kinds of social action but has chosen to concentrate on those who need special care because they are dying..We say we are DEVELOPING THE HOSPICE CONCEPT IN SPAIN.

The Hospice movement developed (in UK) after WW2 by establishing special Nursing Homes for those who were dying. This implied a partial breakdown of care within the family.A distinct but much larger growth of residential homes for the elderly took place around the same time. Often it can be hard to get a place in such homes if your condition is known to be terminal, because you might increase the number of deaths per year, which is bad for their image.

Hospices, on the other hand, have no such hangups. At least one hospice group (in the U.S.A) attends some 20,000 deaths each year. It is the business of a hospice to assist patients to spend their last days free of pain in a tranquil environment with all the personal care, attention and medication that is required.

It is, however, now well established that a majority of terminal patients would prefer to die in their own homes. As a result Hospices’ response is frequently to send their specialist carers into the community in order to respond to this desire.

None of us want to involve ourselves in discussions about euthanasia. That is against the law in most countries and as a charity Caring Together is not among the campaigners. We are concerned to give assistance within the law.

As we’ve indicated the Hospice Movement has given more and more expression to the desire of patients to die at home, in their own familiar environment.

So a good hospice, as we now visualise it, is likely to be a centre of excellence of ten or twenty beds, to which most patients will come for relatively short stays so that their condition may be stabilised and their pain brought under control.

Once this has been achieved, we will try to ensure that patients who wish to do so may return home for extended periods attended by care teams sent out from the Hospice. If things get rough again the patient may return to the hospice for a while, perhaps more than once, in order to adjust the nursing regime & medication for another spell at home.

Thus a good Hospice will have a high rate of turnover of patients (as high or higher than that of a hospital) and become the administrative centre for teams of doctors, nurses, care auxiliaries & social workers, some of whom may also work in other sectors of health care, which operate outside the hospice.

An important part of CT’s work is to create awareness of the need for such services. There is no doubt that the costs will be considerable. We cannot foresee when the public sector will take up the challenge, although we think it must happen sooner or later. Until it does so we rely heavily on the private sector and the charitable sector.

THE CURRENT SITUATION is that we are encouraging the closest collaboration (building a web of confidence if you like) between individuals in the public, private and charitable sectors in order to create acceptable conditions for terminal patients. We are also eager to cooperate with specialist societies which work to challenge particular diseases (such as Alzheimers, MS, Diabetes together with Heart & vascular diseases and of course Cancer in all its forms).

We hope that as a result of this activity the need for an integrated service will become more and more apparent until, from somewhere, the money comes for the provision of the first Special Care Unit, as we prefer to call it.

IN ORDER TO BRING IMMEDIATE ASSISTANCE to patients, such as those who have been discharged from hospital with little prospect of a cure, we are encouraging agencies which deliver domiciliary care to take on board the specialist skills and equipment which may be needed for terminal care at home.

Recognising that Social Services have budget limitations we are ready, according to what funds we have available, to meet part of the cost of such services if the patient cannot afford them. Two types of case spring to mind as examples.

In the first, older persons may find that they have serious cash flow problems in meeting the cost of care.

In the second type of case, a family may experience a sudden loss of income as a result of the serious illness of the breadwinner. Then we feel we have the additional duty to contribute towards holding the family together around its stricken member.

So you see, our work involves a great deal of networking with other agencies. But above all it involves being prepared to support each patient who needs us as he travels any of the ten thousand roads to the end of life.

Few deaths are easy deaths, I am told. Many of the roads to death, travelled alone, bring two years or more of disability, discomfort and perhaps serious pain. CARING TOGETHER exists to bring alleviation of pain and control of symptoms to those difficult years with all the means made possible by the generosity of the public. That is why we need Representatives throughout the Costa Blanca to take responsibility for spreading these ideas and to raising the funds which can make it all happen.

ADDENDUM.

Since the above was first written in 1999 we have got to know more about the development of the policy of Spanish public health services in relation to terminal patients.

The intention appears to be provide hospital-based palliative care teams to support terminally ill patients in their own homes after their discharge from hospital. These teams often consist of two doctors a nurse, an auxiliary carer, a social worker and a psychologist.

This is regarded by SECPAL, the Sociedad Española de Cuidados Paliativos as the most cost-effective way of addressing an increasing demand for this type of care. SECPAL’s website, www.secpal.com , mentions TWO such teams in Alicante province, (in 2001) based in San Juan and Elche respectively, while there were more than 20 in Madrid and 95 in Cataluña.

Other hospitals in Alicante province now host such teams. Generally speaking they are funded by A.E.C.C, not the Health Service, in which the competition for funding of curative treatment is intense enough to leave palliative care out in the cold.

Caring Together is eager to support an increased provision of hospital-based palliative care teams.  

In order  to increase the supply of suitably qualified workers at all levels, we plan to offer schorships to help interested professionals dedicate  time to officially approved courses in Palliative Care.

© Henry Lock & Caring Together. May 2007. May 2008.

Ref: CT SOME of the things that motivate us.